Monday, April 25, 2011

Happy Easter! After yesterday's warm up for egg hunting I considered myself a pro for the egg hunting at Grandma and Papa Smith's today. It was still a little chilly but the rain held at bay long enough that I could find my eggs. The strategy was a little different. Instead of just grabbing any egg I could find, I was supposed to look for pink and purple eggs while Dylan had green and blue and Skyler had one single yellow egg worth $10. I found Skyler's egg right away (it was at my level) but couldn't reveal the secret until he found it on his own!

This morning Mommy and got up and going pretty early to make the 9:30 am showing of Rio with Hope Kids. I was pretty excited to see a movie about a bird up until about an hour in when I gave a big yawn and said I wanted to go home. Since this was only my second movie ever in the theater Mommy cut me some slack. I prefer lots of singing and dancing and there was just too much talking for my taste.

When we slipped out Mommy decided to drop by the mall quickly so I could catch a glimpse of the Easter Bunny. As she predicted I didn't mind waving at him/her/it but would not consider for a second sitting on his/her/its lap!

Mommy tried to slip by the carousel but I wasn't having any of it and I ended up on a zebra and a rooster before Mommy had to get off or risk passing out.

I was super excited to go to Jackson's house tonight for an Easter egg hunt but Daddy required that I first take a nap. I hopped right up in bed and fell asleep almost immediately. Mommy came to wake me up a few hours later and then I joined a few other kids for my first egg hunt of the holiday season. Because of the rain clouds, 300+ eggs were thrown around the house on three different levels - most out in the open since so many of us were new to egg hunting. Everyone ended up with lots of eggs!

It's a time honored tradition that I finally got to take part in - coloring Easter eggs! I have no idea why I am almost 4 and just now coloring Easter eggs for the first time - I know, I am horribly deprived. Maybe it was the mess (Mommy spilled two cups of colored dye all over the table) or maybe my parents don't want to eat that many hard boiled eggs or maybe it is the awful smell coming from the fridge every time they open the door because of all those hard boiled eggs! Still I guilted my parents into it and had a blast!

Friday, April 22, 2011

I am adjusting to life without my hardware and loving it! With the weather still a little hit or miss I am a bundle of energy needing an outlet. I can't wait for easter egg hunts this weekend and I hope the weather will particpate!

Skyler and Dylan, my cousins on Daddy's side, both attend Spectrum Academy. It is a charter school for kids with autism. Skyler started attending several years ago when it first opened. He had previously attended public school but having Asperger's made it very difficult and Spectrum Academy became available at just the right time. He hated going to school and was falling behind but after a few years at Spectrum he has turned all of that around.

Last night was the annual spring fundraiser and Mommy and I attended with Grandma Glenda and my aunt Ruschelle. Skyler wasn't feeling well but Dylan performed along with kids from all the different classes. When Spectrum opened several years ago it was just an elementary school but it has expanded to junior high and high school which will allow Skyler to finish out his education there.

I was enthralled watching the kids perform. The preschool and kindergarten classes sang some Signing Time songs and I was signing right along with them. In fact I probably would have headed up to the stage to perform right along side of them if I could have!

Mommy volunteered in the school for a few hours before they opened the school all those years ago and she was impressed with how far they have come. Spectrum really has made a difference in Skyler's life and if anyone is interested in learning more about how to help you can find out more at their website: http://www.spectrumcharter.org/

Tonight just moments before Michelle showed up for her shift, Peyton decided to head down stairs to talk Travis into letting her ride her bike in the living room. I was upstairs sitting on the floor of her room.

A few seconds after she left the room I heard the sound that needs no explanation - a small body tumbling down the stairs and hitting steps along the way. I was steps away from the top of the stairs and Travis just steps away from the bottom of the stairs. We both arrived at the same time and there was Peyton sprawled at the bottom of the stairs. I knew from what I had heard that she fell the entire 15 steps.

She had been up and down the stairs 10+ times that day. I remember just days earlier thinking to myself that it's pretty amazing she had never fallen down our stairs. Now the picture above is not our actual stair case but it is pretty similar with the exception that ours actually has a hand rail (which Peyton rarely uses). When we lived in California we were in a rambler so Peyton had no opportunity to practice on stairs. So when we moved into this house in June of last year it was a concern - espescially since we have three levels and two of those staircases are very steep.

I ran down to scoop her up and she cried for no more than a minute. I asked if she was hurt and she pointed to the back of her head and her right arm. A little more than 24 hours earlier, Dr Morales had warned us that her jaw was still fragile and now she's just fallen down a flight of stairs! Thinking about it later, though, it was probably a stroke of luck that it happened after the hardware was removed or there is a good chance they would have caught on the carpet and really done some damage.

Peyton dusted herself off and proceeded to ask Daddy about riding her bike and Michelle arrived moments later. Michelle checked her out as well but couldn't find anything concerning and assured me that had she broken her jaw we would know it.

As I reflected on how terrifying the fall down the stairs was, I recalled that just days after we stopped turning with her first jaw distraction, Peyton rolled off the changing table and landed on her face. So just warning you all now that next time she has a jaw distraction we will plan on keeping her in a bubble.

Wednesday, April 20, 2011

Yes, after months of anticipation it was surgery day. Just to stretch it out a little longer, my check in time wasn't until 12:45 pm. That gave my parents plenty of time this morning to explain that I wasn't allowed to have any crackers or brown soda. I was pretty ticked off about that but when Mommy explained that Papa drinks Sprite and I could drink that I took one sip before deciding it just wasn't the same.

Since I am normally one of the first cases my parents are used to a 6 or 7 am check in time. When they got to the hospital the pre surgery waiting area was completely empty when usually it is standing room only. I didn't mind, while we waited I got the toys all to myself. After about 15 minutes, we were led back to the exam room where I got height, weight, blood pressure, pulse and oxygen saturation levels checked. Since I spend time each day pretending to be "Doctor Peyton" this was all fine with me. It was when the nurse brought out the hospital issue jammies that I stared to cry. Not long after Dr Morales came by and I immediately started crying at the sight of him (surgeons bring this out in me I guess). I wanted to keep my hardware so Mommy asked Dr Morales if I could. I am sure he thought Mommy was crazy but he said that would be fine.

After Dr Morales left, we were moved to the next waiting area where there were lots of toys and I hung out for almost two hours. I was supposed to be in surgery at 2:15 pm but Dr Morales was running a little behind. Around 2:45 I got my Versed to help me relax and Mommy rocked me and read me a few books until the anesthesiologist showed up. Mommy, Daddy and I walked back towards the OR and up until the point of hand off I was smiling and happy. As usual my parents last glimpse of me I was crying!

Dr Morales had warned my parents not to get too comfortable because I was only going to be in surgery 30-45 minutes. Sure enough about 30 minutes later, my parents were asked to go to the consultation room because Dr Morales would be out shortly. A few minutes later he came in and said the surgery went fine and they were cleaning up the hardware to send home with me. He told my parents that the pin sites should close up in 7-10 days. I was cleared to go back to preschool but he said the bone was still very fragile and to treat it carefully. He wanted to see me back in his office for follow up in 6 weeks to check how I was healing. Then he said we could start looking at scheduling a sleep study for possible decannulation. Now both my parents would like nothing more than to get my trach out but Mommy called a time out at that point in the discussion. Apparently, Dr Morales had forgotten about the last conversation several weeks earlier where they had discussed several other things would need to happen first - the joint and the palate repair.

Once Mommy reminded him, Dr Morales back tracked. Prior to the surgery, Dr Morales had thought the joint might need to be fixed surgically. After removing the hardware he thought I had pretty good movement and surgery may not be necessary. However if it wasn't surgically repaired it would require stretching with an appliance but the bone would have to heal more before that could be started. The palate, though, would probably need surgery. So no sleep study for now until the joint and the palate issues are resolved.

My parents went back to the waiting are and because of the short time under anesthesia Mommy figured it would be just moments before they could see me in post op. She was wrong and at one point my parents were told I was stable but taking longer to wake up then expected. About 4 pm, Mommy was called back to post op where I was just waking up. Initially, I was content to just sleep while Mommy held my hand but as soon as I started stirring I started my usual freak out session about the pulse ox being on my finger and the IV in my foot. The nurse thought I might be in pain so she gave me some quick meds but it became clear pretty quickly it wasn't the pain. I would calm down while Mommy rocked me but as soon as I looked down at my foot and saw the IV I would start freaking out again. They at least moved my pulse ox from my finger to my toe but I still wasn't happy. It only took a few moments of being awake for me to reach up and touch my face to verify the hardware was gone. As soon as I did I immediately asked to see them (see Dr Morales, Mommy wasn't lying when I said I wanted to keep them)!

Around 4:45, I got moved to the recovery area - the last stop before being discharged. They brought Daddy in and I shared with him my unhappiness as well. The nurse agreed to remove the IV as long as my parents were aware that there was a chance it would have to be replaced if I experienced vomiting or nausea. It was worth the risk and they took it out. Figuring that I had gotten my way with that I then started pulling off the pulse ox. Since the nurse had left while I started to get a feeding, Daddy "took one for the team" and put it on his finger so the alarms would stop going off. I settled back with my brown soda and watched some cartoons while I continued to get my g tube feeding. The nurse returned about 20 minutes later and boy was she ticked off that Daddy was wearing the pulse ox. When she asked if he had been wearing it the whole time he lied and said no! Hard to say if she just wanted to get rid of us at that point or if she would have let us go anyway, but she signed the discharge papers and I got a wagon ride down to the pharmacy for my medications. Then we were on our way home by 5:30 pm!

I did great on the ride home sipping my brown soda and rifling through Mommy's wallet. Once we got home, I downed 3 more small glasses of soda and later 1 1/2 Capri Sun's as well. When Michelle arrived at 10 pm I had plenty of energy and was ready to watch a video she brought with her.

Tuesday, April 19, 2011

It was supposed to be a day at Hogle Zoo but with rain clouds threatening we went to the aquarium instead. On Friday I got my year membership pass and had my picture taken but when two busloads of kids showed up Grandma and I went home to avoid the germs. With surgery tomorrow, it was time to brave more germs and have a little fun. It was a fun crowd - Traiton is 4, I am 3, Jackson is 2 and Collin is 1 - talk about chaos! I don't think Jackson stopped running long enough to look at anything and since I want to do exactly what Jackson is doing I went running right after him!

This morning we decided to brave potential germs a few days before surgery and went to Black Bear Diner for breakfast. Yes - completely idiotic. After waiting 20 minutes for a table with streams of people coming in and out we had been exposed to pretty much every germ floating around at that moment. We were so happy when the meal arrived very quickly - we were certainly starving by that point.

Peyton was in rare form, having a great time at the table eating Splenda, salt, pepper, butter and drinking soda. If you saw how she "ate" you would think 1- we are awful parents (I'm not necessarily disagreeing) and 2 - she should be 500 lbs by now with that diet. She was in a great mood, though, and there wasn't any cries or tantrums so maybe people weren't thinking 1 - we were awful parents. A group of folks were sitting across the aisle and as they got up to leave an older gentleman stopped by and told us what a beautiful daughter we had.

Now remember, we don't have anything to compare to but it strikes Travis and I as strange that people go out of their way to tell us that all the time. Later in the day at the grocery store, the checker not only gave her the customary sticker but also dipped into her own purse to hand Peyton a toy that she said belonged to one of her grandchildren. Seriously people this stuff happens to us almost every time we go out with her. Part of me thinks it is very sweet and what is the harm in it. But a part of me wonders if people feel pity for Peyton and want to try to "make up" for everything she has gone through. Now don't get me wrong - Travis and I probably spoil her more because of that very reason at least to some extent. But I wonder what people are really thinking when they do and say the things they do and I can't help but think I am doing Peyton a disservice by not explaining that she wouldn't want to be recognized for her disabilities rather then her abilities.

Since I want to believe in the good of people I will continue to take their comments at face value. Because maybe they really aren't looking at her disabilities at all... maybe I am the one who can't see past them.

Finally, there was a few dry moments so Mommy and I spent some time riding around the drive way while Daddy got some time in on the Harley. Unfortunately it is going to be another wet weekend so we are soaking up the sunshine as long as we can tonight!

All day at Grandma's I kept talking about "animals". When Mommy came to pick me up I couldn't stop talking about it. Mommy mistakenly believed it had something to do with the dogs but all questions were answered when we made it home and I brought Mommy a handful of plastic zoo animals. Michelle had brought them for me last night and since I wasn't asleep they didn't make the trip to Grandma's today but that was all I could talk about until we were finally reunited!

Tuesday, April 12, 2011

With Mommy and I both fighting our cold this week and me only two weeks out from surgery we tried to have a quiet week at home whenever possible. Despite the inconsistent weather, I am having so much fun watching my beans grow. Every day I come home from Grandma's and have Mommy and Daddy come with me to check out the progress.

In the last week I have become a very dedicated mother to two of my dolls. One is a bath doll and is never clothed but comes with me for bath time. The other has a dress, hat, pacifier and shoes. Since she comes with me everywhere (the store, Grandma's, the potty) it has been a challenge not to lose anything. Unfortunately, I am down a shoe but I have been promised by Grandma Glenda that she will make me a new set of shoes for my baby to complete the outfit. Last night I laid my baby on the Lazy Boy, covered her with my lovie and insisted that the overhead lights be turned off since she was sleeping. It's great fun pretending to be a Mommy!

On Saturday night my two furry brothers and I stayed the night with Grandma and Papa Smith. Since moving to Utah I have had a few overnight stays while my parents were 1/2 mile up the road at home. Prior to these overnight stays my parents had never both been away from me over night unless I was hospitalized. For my Mommy's birthday her family got her and Daddy a night's stay at the Park City Marriott. Since I was over my cold, my parents left snowy Salt Lake and headed up the mountain to snowy Park City. With ski season at a close it was quiet in Park City. They had a relaxing night and were back to pick me and my furry brothers up by 10:30 Sunday morning. Since my grandparents have 3 dogs of their own it was a full house. Pandy slept with me while Henry and Chili joined Coco and Sadie in my grandparents bed! Although Henry and Sadie had a few tense moments Saturday afternoon by Sunday morning when my parents came to pick us up they were getting along just fine!

Sunday afternoon my parents finally got me in to have my hair cut and as you can see they cut off quite a bit - about 3 inches. I wasn't so sure I was keen on the idea of a hair cut but once I sat down in the chair and could gaze at myself in the big mirror it didn't seem like such a bad thing. I had a great time watching Daddy get his hair cut at the same time and even got a sucker for being such a good girl!

Monday, April 4, 2011

It may be April but in Utah we are still walking in a winter wonderland! All that driving rain last night turned into inches of heavy wet snow this morning. I couldn't quite believe my eyes when I looked out the window. Both Daddy and I are itching to get on our "bikes" but with all that snow it will be days before we can get back out there. That's okay, I put on Daddy's riding boots to ease the pain!

Did you know....the average adult experiences 2 to 3 colds per year, while children average 8 to 12 colds per year. Mommy has lost count but she thinks she and I are now experiencing number 9 in a 7 month period. Apparently that is normal for me but not so much for the average adult. That's okay, I never did think Mommy was "average". Special needs kiddos make for special mommies right?!

What was supposed to be a really nice day became a windy and eventually rainy day. So what is a girl to do if she wants to ride - ride around the garage of course! After a nice long nap, Daddy and I went to surprise birthday party for Uncle Jeff where I had been booked as the entertainment while Mommy and Grandma Glenda went to the Reba/George Strait/LeeAnnWomak concert. (Thanks Uncle Jeff for letting Mommy steal the photo from your Facebook page) We all had a good night!

Most parents don't encourage their children to practice sticking their tongues out! Before my jaw distraction I couldn't get it out very far, though, so my parents are only too happy to have me practice!